Hello everyone! My name is Ben and I was born March 10, 2008. I have Cystic Fibrosis and Short Gut. This is all about me and my determination to find a cure for Cystic Fibrosis. I was born with a blockage in my small intestine. This caused a large part of the intestine to twist. When I was 12 hours old I underwent surgery to remove the bad parts. I have about 40-50cm of good intestine remaining plus a healthy ileocecal valve. On March 22, 2008 I was diagnosed with Cystic Fibrosis.
Tuesday, April 21, 2009
Check me out!
I am walking all over the house with the assistance of my walker. I get really excited and scream when I am on the go.
I had a great time in Atlanta visiting my Great Uncle Norm, Jerry, Ms. Jenny and her kids. I also got to hang out with my cousins, Josh and Maddie. Maddie was a big helper. My Aunt Nicole got me a cool Elmo Easter basket filled with all sorts of goodies. It even had a little blow up Bozo the clown. My hair is kind of like Bozo's hence the gift. I went to the Atlanta Zoo and was more interested in the people than the animals. It was a very packed day, so kids and adults were everywhere. I did very well on the car ride there and back. I watched a few Elmo DVDs and listened to my Curious George soundtrack. I even did my TOBI breathing treatments in the car.
The best part of the trip for Mom and Dad was when I woke up Easter morning. After I ate, I was laying in between Mom and Dad and I fell back asleep until 9:00 a.m.! That was the first time I have ever fallen asleep with them in their bed. I am so used to sleeping in my own bed I always think it is time to play whenever I am in their room.
I am getting outside for nice long walks whenever the sun is shinning. The past few days I have been saying, "Rain, rain, go away, come again some other day."
~Ben
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8 comments:
Good Morning Beautiful Benjamin,
We enjoyed traveling to Atlanta on Easter weekend and spending time with our family. You, Josh, Maddie and even Daisy were perfect travelers. We loved visiting Uncle Norm, Jerry, Jennifer, Mary and Judy, and sitting outside in the Atlanta sunshine was well worth the trip.
Can't believe the Great Strides Walk is only two weeks away. Last year you were still in the hospital when we walked for a cure. We're praying that soon CF will stand for "Cure Found". Love you bunches big boy, God Bless you and keep you strong, Grandma Carol & Papa Phil
Jake and I have watched this video three times already this morning. Jake says "uh oh, what happen?" when the video stops, and then we have to play it again. Great to see Ben on the move! We will see you at the walk. Lots of love -JKJ
Love the new pictures! What happened to the ones from Easter that I am in? haha Thanks Aunt Kati! Ben that curious George soundtrack must be the one and only Jack Johnson... Your mom and I will have to go to that concert again this year! Emma loves that CD, her favorite song is The 3 R's...She knows all the words! Well I can't believe how big you are getting. Love you lots and we miss you lots. Love, Auntie Annie
I meant the pictures from your birthday...opps!
Hey big boy!
I must say your video is a riot. I can't believe how much your growing up! I can't wait to stay with you in just under two weeks! I must say I'm very excited and honored to be the Godfather of such a handsome young man! Much love buddy and miss you tons
Uncle Adam
It was great to see you in Atlanta Ben! Can't wait to see you again. Keep up the great work.
Love,
Chris, Jen, Logan and Delaney
BENJAMIN I'M SO GLAD YOU WENT TO SEE UNCLE NORM . THE PICTURES OF YOU & THE FAMILY ARE SO WONDERFUL TO LOOK AT. I REALLY ENJOY EVERYTHING MOM & DAD WRITE ABOUT YOU !!!!!! YOU HAVE A AWSOME FAMILY LOVE YOU DIANE KRESEVICH GOD BLESS YOU
Can't believe you were in Atlanta! Unfortunately we would have missed you even if we knew you were coming. We were down in Florida in our camper. Let us know next time you come down!
Did you know we are having another baby??
The Ivers
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